Hi, Jenny. Welcome. There's a wealth of knowledge and support here.

The main thing to know about MG is that it's all about fatigable muscle weakness. When you use a muscle in a repetitive or sustained way, it can get weaker. Why? Antibodies attack the neuromuscular junction where the muscles and nerves come together, damaging the area where acetylcholine (ah-seat-ill-co-lean) goes into the muscle. I call acetylcholine (AChR), a neurotransmitter, our "muscle gas." We have enough of it but we don't have enough openings for it to get to our muscles. Does that make sense? Kind of like trying to fill up your car's gas tank with an eye dropper.

At least for me, MG is all about alternating activity with rest . . . and drugs. And common sense. If you push yourself too hard with MG, your muscles can weaken to the point of not being able to walk, talk, swallow or breathe. A common initial complaint is ptosis (toe-sis), accompanied by double vision. It's when the muscles around the eyes get weak and, therefore, don't focus equally on objects. Some patients have neck weakness as a first sign and for others it might be needing to nap! MG is different for everyone. Some people have a mild case and others are on multiple drugs and not doing well. There's no way to predict - if you have MG - how you will do with it.

You can also be mild in the morning and more severe by the end of the day's activities. Many MG experts are fond of saying that the only thing predictable about MG is its unpredictability.

MG is mainly a clinical diagnosis that is backed up with tests. The main tests are the AChR binding and modulating antibodies or the MuSK antibodies, a repetitive nerve stimulation test, an EMG and a Single Fiber EMG. Some doctors still do the Tensilon test and there are still times they do an "Ice Pack Test," especially in an ER setting. Obvious muscle weakness, like that of the face, will improve with Tensilon, cold or Mestinon (a main drug used for MG).

You can have MG and not have positive antibodies. It's a complicated issue, this testing/diagnostic process because it's not always as simple as A, B, C. I have positive AChR antibodies, a positive Tensilon test and a borderline SFEMG. Clinically, it's very obvious that I have fatigable weakness that gets better with Mestinon, Tensilon and rest. It's important for you to be evaluated by an MG expert if you can because some "regular" neurologists may only go by the one paragraph alogrithm from their medical books!

I'm not going to give you much more info. I think it's important that you do "belabor" your story! We're not doctors but we might be able to help you better if we had more information. I'm sorry you have a heart condition. I know someone with APS and it's no picnic. It's quite common for those with autoimmune diseases to have it.

What have the doctors told you? What are your symptoms?

Share what you feel like sharing. Everyone here is great at helping. I hope you get answers soon.

Annie